Saving Baby Jonah
Campus Community Reaches Out to Support
Infant Son of UCSD Pediatrician in Need of Bone Marrow Transplant

Ioana Patringenaru | Oct. 15, 2007

Jonah napping at home.

Jonah Chuang is barely two months old, but he already needs a bone marrow transplant. The infant son of a UCSD pediatrician suffers from a rare genetic disorder that causes his immune system to attack his organs and blood cells.

His parents, both physicians, are frantically searching for a bone marrow donor. But Asian donors are rare, so family, colleagues and friends have launched several bone marrow drives all over Southern California and beyond to find a match for Jonah. Seven drives will take place this week in San Diego, Los Angeles and Orange counties, including one on the UCSD campus. (see factbox below)

“For me, it’s not just about my son,” said Jonah’s mother, Dr. Jeannie Huang, an assistant professor in UCSD’s department of pediatrics. “It will help everyone from this ethnic background from this point forward.”

Registering as a bone marrow donor requires a simple swab on the inside of the cheek, to collect cells and test them for a match. Donors also provide their medical history and contact information.

Jonah needs a transplant by Thanksgiving. He first developed a fever when he was three weeks old. The fever wouldn’t go away and doctors put Jonah on antibiotics. Then they found out that his blood counts were low.

Jonah with his mother (left) and his grandmother.

After a series of tests, Jonah was diagnosed with HLH (hemophagocytic lymphohistiocytosis). There is a high probability that the disorder is genetic. That means Jonah’s three-year-old brother, Ethan, might also be at risk. That also means he isn’t a candidate to donate bone marrow for Jonah. His parents only share half of the baby’s genes, so they’re not good candidates either.

To find a compatible donor, Huang turned to family, colleagues and friends a week after Jonah was diagnosed. Her former assistant, Karen Becerra, remembers getting an e-mail from her. “It was very touching,” Becerra recalls. “This is as close as it gets to a pediatrician’s worst nightmare.”

The response was overwhelming, recalls Dr. Sherry Huang, a family friend and also a pediatrician at UCSD. Everyone who had been touched by baby Jonah’s parents sprung into action, she said. “We just wanted to do a crusade where we end up finding a match,” Sherry Huang said. “We had no time.”

Jonah’s father, Nathaniel Chuang, went to medical school at UC San Francisco and friends set up a bone marrow registration drive there. Family and friends from Canada, to Boston to Southern California did the same. “I think it’s wonderful,” said Jonah’s mother. “We really have been touched by the kindness of others; it helps us go through each day.”

Ethan Chuang, 3, holding his baby brother, Jonah.

So far, more than 1,800 people registered as bone marrow donors during the drives organized for Jonah. But the baby boy is still waiting for a match. Meanwhile, he is undergoing chemotherapy once a week. It takes him a couple of days to recover, said his mother. His parents are still adjusting. Relatives are now taking care of Jonah’s older brother. “It’s kind of shocking to get the diagnosis in first place,” Jeannie Huang said. “You have to readjust your whole life to deal with it. It’s very draining.”

She said she hoped that in a year or two, Jonah will be able to go out and play with other children. “I hope he’ll have a healthy, happy life,” she said.

This week, seven bone marrow registration drives will take place from Hacienda Heights, to Irvine, to San Diego, where a drive will be held at the Chinese Bible Church in Rancho Bernardo. One of the drives, which is not organized by Jonah’s supporters, will take place from Tuesday through Thursday on Library Walk at UCSD. Sherry Huang encouraged donors to turn out. “They have a chance to save lives—if not just one, many,” she said.

For more information about the bone marrow drives and baby Jonah’s plight, go to: www.savejonah.com